How can the findings of federally funded patient-centered outcomes research make their way into point-of-care clinical decision support systems faster?
That is the question researchers in the Patient-Centered Clinical Decision Support Learning Network (PCCDS-LN) are trying to answer. The 4-year project, which launched in April 2016 with funding from the Agency for Healthcare Research and Quality (AHRQ), is seeking to catalyze dissemination of patient-centered evidence and practices via clinical decision support to improve care and outcomes. The network builds on the work of CDS experts who have been trying to develop standards and frameworks by which evidence-based CDS artifacts can be more easily shared between health systems so that each provider group doesn’t have to recreate the wheel and develop their own CDS content from scratch. A new focus includes how to better share findings with patients.
A team of administrative staff from RTI International is leading the PCCDS Learning Network, with Blackford Middleton, Jerry Osheroff, Robert Greenes and Kensaku Kawamoto serving as key investigators. Approximately 200 people have signed up to participate in the learning network.
PCCDS-LN’s open forum on June 29 provided some examples of how investigators are proceeding.
Marc Williams, M.D., director of the Genomic Medicine Institute at Geisinger Health System, spoke about Geisinger’s effort to make genomics results more useful to both patients and their providers. In a project funded by the Patient Centered Outcomes Research Institute (PCORI), Geisinger sought to improve communications with patients and families dealing with diagnoses of rare disorders.
Traditionally, providers explaining such a diagnosis have face-to-face sessions with patients and families that last an hour or two, followed up by a detailed letter that condenses recommendations. Those letters are static and aren’t as helpful as they could be, Williams noted. Geisinger worked to develop a patient-facing genomic test interpretation report paired with a provider-facing report that could be accessed through the patient portal and EHR. The researchers focused on user-centered design with patients and family members. What would they like in a report? They did the same thing with primary care providers s to create a report for them, with the idea that the reports could complement each other. Last fall they ran a randomized trial on the families of a population of children with undiagnosed intellectual disability, using the new reports vs. the traditional method. Williams said the results confirmed their hypothesis that families were more satisfied with the new results. Results of their research are in the peer review process for publication.
He gave one anecdotal example of family satisfaction: A mother took her child to NIH to see about qualification for studies of rare diseases. The physician there saw that there was no genetic information in the printed material in the folder they were looking at together. The mother asked for access to a computer, logged into the patient portal at Geisinger and pulled up all the information on the spot. “We got very good feedback from the NIH physicians and from the mother,” he said.
Now about the dissemination aspect: Geisinger is working to expand use of the reports for patients with breast cancer disorders. It is seeking PCORI funding to be able to use it to do dissemination across other sites and use cases. “We are interested in how we can move this forward,” Williams said. “It is built on informatics standards and is potentially usable within any Meaningful Use-compliant EHR. We are looking to use FHIR and SMART to make it even more accessible.”
Chris Moesel, a principal computer science engineer at Mitre Corp., described work on an AHRQ-funded project called CDS Connect. Launched in September 2016, it is being designed as a repository of computable CDS artifacts based on evidence-based standards of care. “We are looking at how we can accelerate from guidelines to use at the point of care,” he said.
“We are embarking on a CDS repository to host and share CDS artifacts,” Moesel said. “We want it to be easy to navigate and search, and pleasant to use.” He said you could go to this repository, find the CDS you are looking for based on a guideline and keyword, understand what it is or does, and what is required to implement it. Then you could download it and integrate it into your system.
The first artifacts the researchers are working on involve cholesterol management and statin use based on published guidelines. A cholesterol management working group has been building artifacts from guidelines, Moesel said. Another group is working on the elements and layout of the CDS repository.
The artifacts will have not only metadata and sources but also computable versions using HL7’s Clinical Quality Language (CQL), a specification that defines a representation for the expression of clinical knowledge that can be used within both the CDS and clinical quality measurement (CQM) domains.
CDS Connect is getting ready to kick off a pilot of the approach with the Alliance of Chicago, which deploys cutting edge health IT in safety net settings. The Alliance will pilot the CDS Connect artifacts using its GE Centricity EHR.
CDS Connect will hold a webinar on its authoring tool and rules library in July. Scheduled speakers include Rob McCready, senior principal at the MITRE Corp. and project leader for AHRQ CDS Connect, and Blackford Middleton, M.D., M.P.H., chief informatics & innovation officer at Apervita Inc.